Stephanie has passed today.
This is her husband, David writing. Stephanie has been my wife and partner for the last 27 years. We met in college, fell in love, did foolish things that young people do, and built a life together. Until three years ago, I would never have expected to be in the position of carrying that life forward without her.
Stephanie was a caring, intelligent, and supremely thoughtful person. She touched people with her insights and her stories and with the simple fact that she cared. She helped me learn and grow throughout my life, and I will always miss her.
One of the reasons she maintained this blog was to let friends and family know what was up with her struggle. Frequently you don’t want to pester her all the time to ask what is happening, but a great many people cared, and thus she used this as a vehicle to share that information in a way where it was available to those who were interested without the awkwardness of trying to ask.
However, she also did it in case someone else who was suffering from a similar condition might stumble across it and take comfort in knowing that they did not walk alone. To let this person see the days ahead, and prepare themself for these. Because honestly, cancer is scary as hell, and it is much harder to confront fear in the darkness of the unknown, than when it has been lit for observation.
So I want to make sure to include a final chapter here for such a person. We had already agreed to do such a post together and talk about the last few weeks. Stephanie wasn’t able to type herself any more, but I was going to help her put her thoughts on here. Unfortunately, she wasn’t able to do that. So instead, let me try to to paint a picture of this time period and hope it matches the one she would have portrayed.
When last we saw our heroine, she had just acquired a totally awesome henna head decoration from our friend Kerstin. Stephanie loved this, and wore it proudly. She blogged about this, but then also went on to talk about a mixture of things that had happened both recently and long ago. She mentioned moving to Canada, and well.. that’s kind of what was happening.
She was starting to have trouble keeping track of things. We’d wake up in the morning and go through our usual ritual of discussing the day ahead. She usually thought it was Tuesday. I’d gently let her know what day it was, and who was going to be here to look after her – “Ok love, it is Monday morning. Morgaine has school today but I’m going to be home with you. We have Helen from Macmillan visiting this morning.” “So its Tuesday?” “No dear, it is Monday.” “Oh ok, but it is Tuesday right?”
This usually cleared up as the day progressed. And after a few iterations she would usually understand basically what day it was and what was going on. Our friend Emily was moving to Canada soon, and Stephanie got it into her head that we should move to Canada too. A new job in Canada, which would support a one story house, which would be good because then we could push her around in the wheelchair and she could get to the whole house. That did sound nice, but there was no way we could move anywhere fast enough.
She had become very weak by this point and was having trouble getting to and from the bathroom even with help. There was no way she could go up and down stairs any more, but we had the upstairs set up to be safe and easy.
Every morning I would sort out all her pills into labeled boxes, so no one else had to worry about what to take when. This box for breakfast, this one for lunch, this one at 10:00pm, etc… We’d bring her food up to her in bed, and she had a table right by her with easily reachable water, snacks, liquid morphine, etc.. To the side of that her ipad and charger were hooked in, plus special hand creme for her abused skin (the chemo drugs had done quite the number on her hands, which was one of the things that finally got them to agree to stop them. The skin on her fingertips was significantly worn away, and she had to wear lightweight gloves, take special pills, and cover them with creme to try to slow the process).
She was still having seizures at this point – random fainting spells while she was sitting in bed or doing most anything, but they weren’t the main problem. The largest challenge was simply from the fact that she had been on steroids so long that her legs had no strength whatsoever, and she could no longer walk. You simply can’t stay on steroids overly long without them deteriorating your muscles, and she had been on them a long time indeed. I was angry because I felt like they should have been addressing her seizures with other medicines – supposedly there were other options, but her usual doctors were unable to adjust these and instead she just stayed on the steroids.
We did try weaning her off the steroids, so that maybe there would be a chance to rebuild her muscles. Now that she was off chemo, with a bit of physical therapy she could possibly do this. However, once the steroids were lowered her full brain symptoms came back powerfully, with a ringing in her head so loud she couldn’t sleep… at all… for days.
Getting her back on the steroids fixed this, but her strength was failing fast. Finally her oncology doctors said they would see her, but that she had to come in to the hospital for the appointment. I was pretty cheesed by this point, since I felt like they had been slow in their response. Still, they promised to review her brain meds and see what could be done, and hospital transport would carry her down the stairs and take her to the hospital, and then bring her home and carry her back up again. So this was doable.
This transport staff was skillful and efficient, and was able to get her downstairs and to the hospital without problem. We had a wheelchair waiting for us on arrival, and I easily pushed her over for her appointment. It was a much smoother experience than some of our earlier visits where we struggled with the bus, or simply walking around.
Stephanie was clear-headed for the appointment and was able to talk to the doctor about her concerns and voice her questions directly. I was there to help, but she honestly didn’t need me to do so. She asked and asked, and the doctor very gently answered all her questions, only occasionally making sure that she really did want to know the answers first.
“I don’t think it would be helpful to start chemo again. It hasn’t had the response we were hoping for and will just damage you further.”
“No, we can’t do anything more to clear your head. Our drugs simply won’t work on this.”
“No, you will probably never walk again.”
“Do anything that makes you happy.”
“Don’t worry about coming back again.”
They were the answers I already knew, but it was tremendously painful listening to them given out loud. I could see Stephanie wishing for hope, but seeing just as clearly that there really wasn’t any to be had. She asked how long she had left, and the doctor, looking sad, told her two-three months, maybe as long as six. I knew perfectly well that what she really meant was likely less than one.
The transport took us home and I was crushed with sadness. I tried to talk to her and point out interesting things to look at outside. She hadn’t been out of the house in some time, and I suspected this might be the last time she left home. She mostly just slept though. Her earlier clarity had faded, her strength limited to short bursts and already spent by the trip.
Things progressed surprisingly quickly from there. Stephanie could no longer walk, so switched over to a commode in the bedroom. She always had her glasses on her head and her ipad in her lap, basically any time she wasn’t actively eating. I couldn’t even remove them while she slept – she would immediately wake up and want them back, so I just got used to letting her sleep with them there. Its not like they were going anywhere. Morphine makes you sleep without moving, so they sat undisturbed on her body without incident.
She always wanted the ipad, and when she was clear-headed, she could still use it to poke around a bit on the net and play her game – just something meditative and harmless. However she really wasn’t coherent enough to talk or mail, and we would occasionally get ‘drunk texts’ now. Like when your friend has had far too many and tries to text you at 3 in the morning. Occasionally she’d be trying to mail us something she had thought of, but her manual dexterity and clarity weren’t up to it, and instead we’d get a string of gibberish.
She’d spend hours gazing at the ipad, clicking the same link over and over again. “Hey honey, what are you working on?” “I’m looking for houses for us to move to.” I look over and see a broken link or blank screen. “Oh, can I help you?” “No, I’m looking at houses, don’t mess with it” click… click… click… She was stuck in a loop, and there was no unsticking her.
I started hand-feeding her all her meals since I realized she was struggling to be able to eat. That made eating more comfortable, but she started having trouble staying awake between bites. From there, we progressed to more and more sleeping.. 20 hours/day, 22, and finally just sleeping all the time except when actively woken up for medicine or to drink something. Finally, she wouldn’t wake up at all.
Good bye Stephanie. I love you.